Gutted. Chased my urgent appointment as I was told to do if I didn't get a call this morning. No urgent f2f this week! They want a blood test (yes i can get that to see my levels). Luckily I had one today anyway. Then they said 'then we'll review the situation'. Let's hope and pray the Leflunomide kicks in! Thanks for all your support the past few days. It's helped a lot!
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Rheumy nurse just called. They are trying to get me an urgent f2f appointment with my Rheumatologist for Tuesday or Wednesday next week! 🙏🙏
Rang the Rheumy help line and left a message at half 6 this morning in tears as I always am in the morning now. I'm not coping at all. Hands are useless, so much pain. Upper arms are not working again and so much pain. My hip, not RA, is hurting and is giving way. If I was a dog I'm sure they would do the kind thing and put me down. I'm not 'living' I'm alive but that's all. On Leflunomide 10mg for 2 weeks now but not working yet. Taking morphine slow release plus liquid for breakthrough pain given by gp. I could happily take it all in one go at the mo. Sorry for such a downer first thing. You all 'get it' though.
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Haz58
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You know I think the doctors once you get a certain age they don't care. I'm really sorry to here you storey I hope things work out for you. It winds me up on access to them.
Me too , and I'm in my 80s . Rheumatology always helpful and encouraging. You have to be your own advocate , though , and play your part . Work with the medics , do your own research and you'll find the right path for your particular journey.
I have always found the rheumy helpline of great help and very supportive. I know they can be very busy , i hope you get a call back soon . Take care , thinking about you 🤗🤗
Just wanted to send a warm but gentle of a breeze hug right out to you for today. I hope others will come a long and help lift and support you. Today is not the best day here, but somehow some way we will get through it... and together. Take care and hope you hear back from the Rhuemy Helpline xx
Thank you Pippy. And everyone else. I feel the hugs. I'm reminded i'm not alone now which makes a difference doesn't it. I shouted at hubby this morning and I don't shout😔he was moving something heavy and said how useless he was. I shouted 'try having my body then you'll know what useless is!' he's getting stressed because of how I am. It's been 4 months now. I worry for him as he has heart disease. I was the carer of sorts before all of this started. Now he does practically everything. I'll beg for another steroid Jab to see if it'll get me through until the Leflunomide kicks in. They've refused so far as I broke a vertabrae in October and have no idea how. 🙏🙏🙏
I hope there is something they can do to relieve or take even some of the pain away for you. I had to ask my GP if she would refer me to the Pain Management team and am awaiting on hearing from them. Sometimes things build up and the pain, stress, frustration comes out in various ways. So sending you and your hubby both my warmest of wishes to help you through this. xx
Just don't give up and LEF takes about 12 weeks to work. So its very early days and in any event it did for me make the pain much worse after about 10/12 days and then just sort of worked getting better every day until settling into remission at about 12/14 weeks. So relax be optamaistic and the pain I first had with it was in my hands and shoulders too so it could be that side effect happening to you. I could barely lift my otherwise normal arms. So sry strong take some pain relief and it might just be working for you. x
Medway-lady thank you so much for this! So it could be the LEF causing this for now! If I can keep that in my head hopefully it will help! My hands have never been as swollen as they are at the mo. my arms are just horrific. I've tried ok a pic of what you have said do I can read it over and over again and hope and pray I'll be the same as you after a while. Xxx
I was in agony and rang the RA helpline and my friend the RA specialist nurse told me it is something that happens to some people and if they warned everyone, no one would take it. My husband cut up my dinner and I could barely get the fork to my mouth. Agony but it did pass and the world got colour and I went into remission. Because I got a kidney injury it had to be stopped and I've tried to get it reinstated as nothing has worked so well since not even the biologics ! The injury was definitely nothing to do with LEF so don't worry about that and try Deep Freeze on the joints and copious amounts of fudge. It always works for me. lol X LEF obviously doesn't work for all, but it might be the sign its beginning to get into your system. Stay warm and positive. xxx
Morning. I would ask for an emergency Rheumatology appointment so they can sort your meds out. It took 2 years for my meds to start working for me due to the ‘tapered approach’; and another two to be able to move ‘properly’. Day at a time, and refer yourself to IAPTS for some Mental Health support. This is a lot to be dealing with, and the process takes time.
So pleased you’ve got a face to face as soon as next week. The only thing to do these days I’m afraid is shout and very loudly and keep on shouting till you get what you need.
The NHS is still a service and must fulfil its obligation to its patients when they need help as you so obviously do. I worked as a senior sister for over 40 years (retired now) and it’s definitely bad but there are too many excuses and delays attributed to Covid etc and it’s very easy for us patients to be left endlessly waiting and becoming physically and mentally much worse than is necessary.
So keep on insisting on the best treatment for you, take someone with you to your appointment if you can and write down what you need to say and ask. Being in control will make you feel a hundred times better! Best of luck and hope you feel much better soon.
Thank you Amnesiac! If I've not heard by 12 on Monday I'm to chase the secretary. I've been keeping a log of every day the past couple of weeks of my pain so I can take that with me. Plus an app that shows when and how much morphine, paracetamol etc I've had. This morning I just couldn't cope anymore, I'm glad now I rang when I was told in such a state. I think it got through how bad i am. I'm not a shouter but I'm not a big crier either...usually. x
Haz58. I'm so sorry your going thru this kind of pain but believe me when I tell you I know exactly what your feeling but I wasn't lucky enough for the drs to give me any kinda pain medication other than Tylenol, Naprosyn, or ibuprofen. But the one thing that did help me when nothing else would was prednisone. One minute I would be in pain to the point to where I couldn't even step down on the floor even the bottoms of my feet hurt so bad. But I would take a few prednisone and within the hour I would be almost pain free. Although at the time I was unaware of the side effects from it. I did gain quite a bit of weight thankfully that's about the only lasting effect I've had from it. So now if I have a flare up I'm very careful to just use maybe one or two tabs. I haven't had to use them in awhile tho as I've been pretty stable on the one a day rinvoq it's been working amazing for me going on about a year now. But I sure do hope you can find some kinda relief soon because I do know how your feeling. Hang in there and I hope things get better soon. Sending healing vibes and love your way....XOXO..
Thank you Marienan 🙂 I was on Prednisolone 6 X 5mg a few weeks ago for 2 weeks and it was like magic!The nurse said they probably won't give me it now though because of my risk of osteoporosis. I'll see next week I guess. The consultant may feel differently. Xxx
Just wanted to add to the hugs above and say that we do get it. When the pain gets so bad it can drive you to behave in ways you wouldn’t do normally. Be kind to yourself this weekend, and personally I love Medway-lady’s recommendation for copious amounts of fudge - purely for medicinal reasons of course. 🤗
Hi smile Because I just started it. They are worried about how it will affect my stomach after the gastritis do decided to take it slowly with a low starting dose.
oh that makes sense. If you need to increase maybe take 10 mg twice a day at different times. I tried 20mg tablet but had to change to the two 10 mg. I take it morning and dinner. Hope it works for you!
I am so sorry you are going through this. I think most of us on here will have gone through this at some time including myself. I know this isn't much help to you but I have felt in complete despair at times and I got through it and I am now in remission and live a great life (with the occasional annoying flares.) Unfortunately it takes time to get on the right medication for you and it isn't the greatest time in the NHS just now so it is difficult. If you are really feeling so down mentally, you must go to your GP and tell him/her how you are feeling and get some help with that, to get you through this awful time. You must also persist until your meds are sorted. Don't give up, you will come through this. You will. 🙏
Thank you Sheila. Last Friday I spoke to a GP, I got very upset and said I'd happily take all the morphine isn't if it wasn't for my husband. She was sympathetic but it was just disregarded after that. I know here the waiting list for mental health help is terrible. My brother in law has been told its a 2 year wait after nearly dying from sepsis last year. It's dreadful!
I know it is terrible. I think the best thing now is to keep talking. Keep coming on the site and just share. We will all try to keep you buoyant until you get your pain under control. Sending healing hugs and prayers. x
I’m late to this thread but can fully sympathise after I had a badyear last year with a total body flare - reacted badly to one med and the other stopped working. I have started to feel better now ( on Rituximab) but its been frightening and so painful. And that after 10 years of reasonable control of RA . Wishing you a proactive appointment and a return to a more controlled phase
Bless you. Thank you Janmary! 😘 You just can't see an end to it can you when it gets like this. I am so grateful to this group! I'm glad you got a light at what I know is a very dark tunnel. And I hope it continues for you. Xx
Just want to add, my thoughts are with you, I was like that while waiting for my benpalli injection. Waiting for the nurse to contact me to start it! So good luck and don't give up shouting to get it sorted!
Sorry to hear you’re struggling so much, and hope you have a productive appointment next week. I wonder if you might benefit from pain patches rather than morphine tablets. I use Butec patches, and they are a godsend. I don’t get the peaks and troughs you get with tablets, so sleep better and wake with less pain than I used to.
Clearly your rheumatology meds need reviewing. I suspect they will be reluctant to give you prednisolone, given you’ve had a spontaneous fracture in your spine, I’m not a fan of steroids when there are alternatives, I developed severe adrenal insufficiency from taking steroids, that was only diagnosed after having a severe stroke due to an adrenal crisis. Steroids stop your body producing its own cortisol, and can as in my case cause atrophy of the adrenal glands. I’m now on steroids for life and have to carry an emergency intramuscular steroid injection everywhere, and family trained to administer it. I wouldn’t wish anyone to go through what I have.
Do you take a regular nsaid, if not that’s perhaps an option. I was allowed nsaids along with my Dmards and biologic until I had the stroke, then I had to stop. That’s when my gp prescribed the patches. Hope they find a solution soon for you. Take care 🤗
I had patches but they didn't seem to do anything for me and they didn't offer a higher dose just put me back on the tablets with syrup to take for breakthrough pain. NSAIDS I can't take because of my tummy problems. The nurse said they won't give me more steroids either. I'll see what the consultant suggests next week. X
So sorry to hear that. Can i ask how long you were on prednisolone for please and did you have any symptoms before the stroke? I was on steroids for 2 years at 20mg. I've managed now to warn myself off them over the past 6 months and now take 1mg about twice a week. But i feel dreadful. Losing weight, severely anaemic, funny colour, v v tired, irritable , cold. Thyroid i gone and I've had body scans to check no cancer and that's clear. I'm wondering if it's purely down to the steroids?
I was on steroids for 6yrs when I had the stroke. I had polymyalgia and GCA so steroids were the only treatment. My rheumatologist felt I had an overlap of spondyloarthritis and X-rays and mri confirmed AS. Steroids aren’t good for ASdue to osteoporosis risk. I had to taper very quickly from 10 to 5 for the scan, so it would pick up inflammation. I already knew I had AS thanks to X-rays showing fusion of my sacroiliac joints, so I decided to persevere on lower dose and taper off. I had a lot of symptoms from dropping below 10mg. Initially it was dreadful nausea, they changed my ppi and increased my folic acid as I was also taking MTX. Then I got dizzy and lightheaded and they blamed an ENT issue so referred me, I lost a lot of weight, but put that purely down to the lower dose. I developed postural hypotension. I’m a nurse and suspected it may be my adrenals so asked for referral to an endocrinologist. The stroke was 3 weeks before that first appointment. The 48hrs prior to the stroke, I suddenly couldn’t cope with anything, was in tears over every issue. Intolerance to stress is another symptom. I was taking 4mg and phoned gp to ask if I could go back to ?5mg, but was told to wait till I seen endo in 3 weeks. I had the stroke the next day, my cortisol levels were undetectable, when I was told they should normally be above 500 and 1000 due to the stress of the stroke.
I know other AI patients who developed AI from just a 4 week course of steroids, or just from using steroid inhalers. I’m unfortunate that my adrenals have atrophied and I’m told 90% destroyed. Those with AI from shorter courses tend to still have functioning adrenals that just need coaxing to work again. If you suspect you could have it, get a blood cortisol done between 8-9am, withholding steroids that morning till you e given your sample. If that’s low they should refer you to endocrinologist for a short synacthen test (SST). If it is below 350 you should be referred because at 8am it should be over 500. Here’s the nice guidelines in case you need them 🤗.
I think you will have wait a little longer to get the full benefit of the Leflunomide….as I remember, it normally take at least 6/8 weeks to kick in….hopefully your rheumy will be able to either add something or adjust your dose….but don’t despair……many of us felt as you do at the beginning of our RA. journey, especially the achey arms….but with today’s drugs you will soon get some relief.
I know exactly what you mean….I’m just getting over a nasty bout of Covid……thankfully I’m not in pain, but I’m finding I look fwd to bedtime at about 8pm because I am sleeping OK…. I’m shattered havingdone very little…but I feel fine when I wake up.
I’m very impatient …in my book I had Covid..been there done that move on…but it’s not quite going to plan just yet😀
But let’s keep smiling…we all get there in the end!
I've been there crying down the phone. It's so awful at the time but you will come out the other side. Last July I thought about how maybe I should just take all the pain meds. Now on Thurs just gone I did 10 minutes on the exercise bike at the physio gym. Hang in there.
Thank you oldtimer! I will keep going I know I have to. At that rock bottom point i guess the only way is up. Everyone on here has given me some hope. Yes the nights I dread. X
Hi Haz58, God reading your problems it brought all mine back! But thankfully for the last 12 months I've really improved, I was taking Salfasalzine 2 aday x2 but then I got covid in 2021 and was quite bad had to stop taking the salfa for 12 weeks as I had covid pneumonia couldn't breath, but got over it but my RA got so bad I couldn't do anything I rang my Rhueme nurse and she said to start taking 3 salfa again + 1 x 10mg of leflunomide for about 6wks nothing changed then wow did it change it was great, so I've stayed on 3 salfasalazine twice aday and 1 10mg leflunomide once a day and all is good at the mo! So keep going with leflunomide it's really made me well again and do much more still in moderation but I don't feel so useless anymore, and a little tip I bought a meditation cd and that has really worked too! So keep going and keep saying I will get over this!! I send you hugs and best wishes.xx from beadie
Aw thank you Beadie! You're COVID bout sounds dreadful! I've dreaded getting it! Hubby got it last July, tested positive when we got off a cruise ship. I thankfully managed to keep it away from me by putting him in the spare bedroom, wearing PPE when I went in to see to him and sterilising everything he touched. I'm not getting any side affects from the Leflunomide as far as I know yet, unless as someone said my arms are a side affect but I doubt it as I had this before and that's why they gave me Prednisolone and it went. Maybe they will up the amount I take when I see the Rheumatologist this week. Again you have given me hope! Thank you! I use meditation every day. I have an app on my phone. It is good while I'm doing it. Xx
I can sympathise as I am nearly at that point now feeling I’m alive but not living.
I too started on Leflunomide 10mg but could not stick it, the pain was horrendous and more frightening was my heart rate went up to well over 100 beats a minute it just frightened me. When I phoned the helpline they told me to phone the gp and they all concluded it was not a common side effect and no real advice by either was given so I stopped taking it. My CRP shot up to 48 on it, I did eventually get a f2f but I’m struggling now the steroid injections have worn off and don’t feel the methotrexate is working either but who knows.
Its 14 weeks now and I seem to be going backwards, more bloods in a 12 days.
Hang on in there, at least you have your hubby although I realise that is a worry for you. I’m on my own as my husband died 4 years ago and my brother died in November so I’m left feeling very alone in the world now. It’s hard to explain to people what the pain is like. Be strong you’ll get there
We are always here Akaka. As I've found out, it's a great help hearing from others who've gone/going through the same. I truly hope you get sorted. I would have thought the MTX would have kicked in by now from what I now of it. I had it and had a steroid Jab to tied me over until it kicked in. I worked but like I said before it gave me gastritis. X
Thanks Haz, I just feel it’s a never ending battle trying to find something that does work. My stomach always seem sore on methotrexate and I can feel pain around my liver area, plus it just doesn’t seem to be doing much, but I know they’ll want to up the dose and keep me on it! I also get a sore mouth and tongue! Hope the Leflunomide works eventually, I’ve read it can take a while and can make you worse first, fingers crossed for you c
If it's upsetting your stomach they shouldn't up the dose. My Rheumy asked if any other medications I was taking had changed and they hadn't. Although it's a 'rare' side affect of the MTX injections she took me off it. I had an ultrasound on my tummy and a stool test for cancer to rule everything else out via my gp and all was ok. Then when the gastritis got better 5-6 weeks after I stopped she said yes it must have been the injection. Go with your gut feeling I think, if you believe it's the MTX the them. Good luck. I hope we both find something that works for us sooner rather than later xx
Thanks, that’s interesting. My gp said we needed to keep an eye on my liver as the blood results showed it had shot up. I told the rheumatologist but she wasn’t worried and asked if I had gallstones 🤷♀️! The stomach pains started after the liver pains…
sending hugs as things are so tough sometimes and finding the strength to battle health issues and Lidl fe life is so hard. NRAS I call when I need to rant and it helps x
I have when I have hit the OMG this pain or is this it moments and they listen and they are not connected to you but understand the illness so it helps a LOT x
I said that to my GP. I said nothing is working in my body and no pain except my left leg! 'if that starts in going to come in my faux fur coat, bark like a dog and you'll put me down'. He really didn't know what to say 😂
I haven’t read through all the comments, so this might have already been mentioned, but I was just like you for so long. I had to go off sick for 10 months from my full-time job as a clinical nurse specialist in a busy London teaching hospital. I could barely move, let alone walk and I was in so much pain and like you, constantly crying, which could well have been the steroids! I hobbled everywhere and used my mum’s stairlift to go up and down the stairs. I feared I would never work again. Fast forward to today and after lots of different treatments, trials of medication, ups and downs along the way (four long years of steroids… and their side effects!) and I’m back working full-time again. I’ve got osteoarthritis from the long-term untreated chronic inflammation, but at last I’m on the right medication and no steroids. I hope you get there in the end. I’ve decided to take early retirement (not the best thing to do financially!) but I need to take more care of myself now. 😊 xx
Thank you Ladybird! I hate to hear of people going through the same but also that they come out of it. It gives me hope. I too have got osteoarthritis now. Because of COVID I was diagnosed later than I should have been. I think the RA is rife in me at the mo. I retired early too, for a different reason and yes financially it's hard but there does come a time when health and wellbeing ate more important. Especially with the SP age being 66 now. 19 months left for me to be officially a pensioner. X
Awww, bless you. You’re making me feel better about retirement. I’ve been having little wobbles about it. It feels like such a big step! I was also diagnosed very late as the rheumatologist thought I had PMR (polymyalgia rheumatica), so I just had steroids, when I should have had DMARDs. Once I started on the first DMARD as the rheumy briefly thought I had Lupus, I was able to return to work, although it wasn’t until a few months later that RA was eventually diagnosed. I was horrified, as I’d always thought that I had PMR, which burns itself out. I had so many flares, like you’re having, but eventually gained pretty good control with Methotrexate; then because I weaned myself off the steroids so that I could continue to work in the hospital during Covid, Baricitinib was added. Pushing myself at work with an autoimmune condition has been too much, so I’ll be able to pace myself better when I retire. Not long before you’re eligible for your SP. I’ll need to wait until I’m 67. I really hope you get the help that you need, as I’m pretty sure you’re not on the right treatment yet if your RA is so rife. Good luck. xx
I really feel your pain 😞 I initially started on etoricoxib, then hydroxy was added in, within 6 months methotrexate was also added. Each time waiting for the 3 - 4 months for each one to work, 4 months later lefluminode was also added (20mg) which with all the others started to work, but, I couldn't cope with the side effects of methotrexate anymore so sulfasalazine was added instead, took about the same time to work & the relief was so good.
October my hands, wrists, fingers, toes, feet & knees started to get really painful, waking me up at night in pain & pins & needles, my right shoulder was also getting bad again & now my left has joined in with pain emanating down my arms, rang the helpline 3 times before they replied & said they'd refer me to hand therapy & podiatry. Saw an orthopaedic surgeon beginning of this month about my shoulder(s) expecting him to give the go ahead for another steroid injection but he said I need surgery to dig out the inflammation 😫 also saw the hand therapist last week who's given me a finger splint (as apparently I've got trigger finger) & wrist splints to use at night as I've got carpal tunnel & it seems my ulnar nerve is also affected 🙄
It sometimes feels never ending & at the moment feels as if the splints are making the pain worse, I nearly rang the hand therapist at 11pm Thursday as the pain was so bad when I put the wrist splints on, I loosened them as much as possible & given myself till Monday to see if the pain using them eases, if not I'll be on the phone.
Sorry to have gone on but just wanted you to feel you're not on your own & sincerely hope your f2f goes really well. Big gentle hugs 😘 x
Thank you Garnacha. It's dreadful isn't it. They are so many of us out there the same it seems. It's good not to be alone but not good for others when they are the same as me. 😢 I'll update when Ive seen the rheumy. I hope she can help. Xx
Haz58 here for you. Don't give up contact the helpline at NRAS as they may have further advice. Wish I could help so much more. I've learnt over the years not to take things at face value with my rhuemy team. Question them be insistent, and say is this the best solution you've got for me, why is this not working etc. Never forget you are worth it sending gentle hugs from afar.
Poor you…I have definitely been in your shoes and I am sure a lot of others on here too. These days no one needs to suffer with chronic pain. I was like that when in between changing meds…I had to go for steroid infusion over 3 days….only took an hour. I know no one likes to b on steroids but it just took that awful pain away. I couldn’t take morphine. Then I was put on Rituximab soon after and I have my life back. There is light at the end of that tunnel. Gentle hugs and all the best for next week.
I've just given up Leflunomide after 9 weeks, I've felt pretty bad and my guts really haven't liked it. Rheumy nurse suggested I give it longer, but I'm not prepared to do that, plus my ALT results have been creeping up. No point in going to the gp really, I'm just going to wait til the consultant picks up the email. It can be real rubbish at times. Big hugs to you xx
I'm really hoping you can get the help you need real soon and can start living again. Reading your post reminded me of how I was a few years ago. I was just trying to get through each day. It wasn't what I called living. I felt I couldn't carry on like that as life was so hard and the pain was unbearable. I started Mtx but unfortunately after a year and a half it caused me issues with my lungs and I became really ill so had to stop taking Mtx. But I know Mtx has worked for so many on here and I was just unlucky really that it turned out this way for me. I'm on hydroxychloroquine and sulphasalazine and on 5mg prednisolone. I'm waiting to taper my prednisolone as soon as my meds start working properly. I'm hoping my meds work this time as its been a long wait. I hope you find the right ones that work for you too 💖
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Giving up work.
2nd rheumy video appt & update re nodules.
Update....wow !!
Rheumy helpline not replied to me 😢
